Wade Walters interview: Disability insurance’s ‘exercise therapy’ makes him more sick and disabled

No one who is sick and disabled would expect their disability insurer to cause them more harm.

But if you've got a disease where exercise makes you even more sick and disabled, the insurance company may require you to do 'exercise therapy' or loose your disability payments.

It becomes a Hobson's choice: either do as the insurance company says and get even sicker -- or loose your income.

Why did Wade Walters’ disability insurer subject him to contraindicated exercise therapy - not once but twice - that has caused Wade to be permanently sicker with an even lower quality of life?

And what is to stop the insurer from forcing Wade to undergo more harmful treatment?

When corporate insurers demand a so-called therapy that manifests as harm to already sick patients, when does the government step in to protect its vulnerable citizens?

SHOW NOTES:

0:05:00 Wade was born in central Alberta, Canada, into a big family, and they were very normal compared to stories he's heard of other families - Wade is the youngest of six children 0:06:00 His mom stayed at home to look after the kids, and his father drove a big tanker truck in the oil and gas industry - after high school, Wade started working in the sports goods industry and moved to Vancouver 0:07:00 When Wade looks back on his health, in 2004 - 05 he started to say to his doctor that he was tired - he found Wade's testosterone was low, so Wade supplemented and that helped a bit, but he was still tired 0:08:00 Wade was then also diagnosed with low iron, and they fixed that, but the tiredness persisted - then Wade has oxygen testing done and that warrented a sleep study and that indicated moderate sleep apnea, so he got a CPAP machine - after a month he told his doctor he was expecting it to improve his fatigue, but it didn't 0:09:00 Wade told him that he had friends on the CPAP and for them it was night and day, changed their life completely, they had a lot more energy - but for Wade, it was a bit better but not much - but the doctor didn't report that in his notes, he reported the CPAP was working fine - Wade also had other tests done, pulmonary stress test - he had EKG done because of his severe pain in his lower back, it was so intense Wade thought he had cancer 0:10:00 Wade got progressively worse, and finally got a diagnosis in June 2018 of myalgic encephalomyelitis, or ME (aka chronic fatigue syndrome) - but that was only left his original doctor 0:11:00 Wade realized that doctor was doing the same tests over and over, and expecting something different - Wade decided enough was enough when the doctor wanted to send Wade to a psychiatrist - Wade then went to a walk in medical clinic - he had asked his previous doc for a referral to an internist, but that never happened 0:12:00 But at the walk in clinic, Wade got a referral to an internist - and about a month later he got the ME diagnosis - he'd not heard of ME but then started to do research, but didn't really understand much of the technical info, so it took a while to understand 0:13:00 Then it took a long while for him to accept the diagnosis - 'why would affect me?' - everything else that has happened to Wade, he's recovered from, but this he couldn't do anything about - there was a hope that maybe it wasn't ME, but something else 0:14:00 Wade hoped he had something treatable so that he could get better - ME symptoms include so many more than just fatigue 0:15:00 Wade's new doctor at the walk in clinic had other patients with ME, so was quick to pick up on it - even though Wade rested as much as he could, there were not enough hours in the day to rest so he could be ready for work - in 1992 Wade started working in the financial industry, and licensed as Certified Financial Planner in 1994 0:16:00 Because Wade had gained a lot of experience by the time he got very sick, his role was fairly automatic so he was able to keep working - but when the organization started to change procedures, etc, Wade's cognitive impairment symptom became less manageable 0:17:00 Wade's last year of work he was really struggling cognitively, he had to double and triple check his work - even typing was becoming challenging, it wasn't automatic anymore, he had to think about which finger to use - he also started having trouble remembering how to spell words 0:18:00 Wade would arrive at work exhausted and try and figure out how he was going to make it through the day and do the work 0:19:00 In August 2018, Wade couldn't continue to work, it was too risky for the business - Wade's pain in lower back was constant, and so intense at times he couldn't sleep - it would radiate down his right let to his knee, and up his body to his shoulder blade 0:20:00 Accupuncture was helping with the pain, but it wouldn't go away - finally Wade found a massage therapist who managed to remove the rest of the pain 0:21:00 So in August 2018, Wade went on disability and got a doctor's note saying Wade is unable to work at this time - Wade's employer was responsible for paying short term disability for 22 weeks - then the insurance company pays the long term disability after that 0:22:00 Although the employer is paying disability for the first 22 weeks, the insurance company is managing the disability claim 0:23:00 The insurance company didn't respond to any of Wade's email, phone calls for over a month after submitting all of the forms 0:24:00 but the claims manager never once contacted any of Wade's care givers, not one of them - so Wade is waiting with no info about income 0:25:00 Because the claims mangere was unrespsonsive, Wade went to her manager - finally on October 10th the claims manager contact Wade to say his claim was denied - so it was an automatic denial - Wade contacted her, and she said she wanted to more info - Wade asked what kind of info? 0:26:00 She said 'its all in the email', but the email just said more info, and didn't specify what - Wade was now frustrated, pissed off and hadn't been paid in 2 months and it didn't like he would ever be - his health was deteriorating because it takes a lot of energy to gather the info 0:27:00 Wade realized he couldn't physically or cognitively respond on his own so starting looking for lawyers and found one by late October, a labour lawyer - and she said 'why did they deny you - it makes no sense - this is a slam dunk' - and the lawyer wants copies of all the documentation, including the insurance policy 0:28:00 But the insurer refused to give a copy of the contract - so Wade contacted his employer to get a copy 0:29:00 They sent him 1 small portion of the policy - Wade said he needed the whole policy and had to fight with head office - it took weeks of emails and phone calls before he got a copy to give to the lawyer - the lawyer said this would be easy, just need to get doctors on board, and she sent it off to the insurer at the end of December 0:30:00 Wade submitted supplemental info from his doctor and lawyer - in early 2019 Wade was refused again - by this time Wade has spent about $4000 on legal fees - the lawyer says let's submit everything for all the doctors you've seen 0:31:00 It ended up being a couple hundred pages - Wade's doctor wrote another letter, a Physicians Statement, it cost Wade $1000 0:32:00 Finally in late June Wade insurance disability gets approved - that was a huge financial relief - the insurer paid Wade retroactively, but his employer didn't pay the 22 weeks until the end of August - then the insurer wanted Wade to do a functional assessment 0:33:00 Wade saw an occupational therapist - he spent 1.5 days with them for assessment - Wade did super bad on some the tests - the tests were 'real life', like balancing a ledger - easy peasy right? - but Wade couldn't do it 0:34:00 Another test had Wade focus on a task, but there would be a sound interruption and Wade was to count the number of tones at the same time as focusing on the task - but Wade could only do 1 or the other at a time 0:35:00 They also did a physical assessment, like lifting, balancing, hand grip - another test had Wade go shopping with a budget at super store and he failed at that too 0:36:00 The hallmark symptom of ME is known as 'post exertional malaise', and that means any exertion, like walking up a couple of flights of stairs, carrying groceries, will bring on ME symptoms hours or even a day or 2 later - Wade doesn't know if the occupational therapist (OT) knew about this hallmark symptom 0:37:00 Wade was quite sick and tired after the 2 days of assessment - that means a lot of horizontal time, only being vertical when necessary 0:38:00 It took 5 or 6 days for Wade to recover- Wade did not see their recommendation for treatment - the OT asked Wade if he wanted a copy of the report and Wade said yes - the OT said he could get it from his insurer, so he did ask the insurer 0:39:00 But they never sent anything - Wade asked the OT for a copy and she finally sent it in August - but now there is a Rehab Manager involved and he wants Wade to do OT 0:40:00 In Sept Wade saw the OT, and he explained about ME - but they wanted Wade to be on 'graded exercise therapy' (GET) - but the people with ME know that exertion makes them sick, so GET will only make them sick 0:41:00 So they had Wade do physical exercises and cognitive exercises - 1 hour of physical exercise, plus lifting weights, per week - and also 1 hour of cognitive exercise per week 0:42:00 So that activity was added on to Wade's regular stuff, like going to the doctor, showering - but showering doesn't happen too often any more, too much effort - Wade could not complete the 6 week program - so Wade was sicker then when he started the 'therapy' 0:43:00 The OT said she'd send in her report, but it was the claims manager that would decide what would happen - Wade had to get his doctor to write another note, and the doctor was quite terse with the insurance company: "Wade was disabled and would likely remain disabled." 0:44:00 But the Rehab Manager wants Wade to try GET again - Wade agreed only if they scaled the 'exercise' way back, and the Rehab Manager agreed - The OT did have good advice about pacing Wade's energy - like only doing things in maximum 10 minute efforts before resting - so if he couldn't finish the dishes in 10 minutes, that's okay, he'd go lie down 0:45:00 Wade gave the OT info from Dr Myhill in the UK about safe exercising for ME patients - very slow, light weight repetitions - so that's what they tried - it took about 20 minutes with the OT, and only 1 set of each exercise, with maybe 6 reps 0:46:00 By the end of December Wade had to tell the OT that it was too much, and by that time the OT was going to Wade's house so he didn't have to travel - so the OT saw how much Wade was really struggling 0:47:00 At the end of January, Wade had not heard how the insurer was responding to Wade's inability to do OT - but the 'treatments' made Wade sicker - he has not recovered to his previous ability before 'treatment' started 0:48:00 Wade was starting to feel a bit better until the insurer required more testing and the OT required exertion - he did have a routine that worked, but now he's too sick for that - he's not had a 'good' day since December - Living with ME is brutal - Wade doesn't even have cable tv, because he's rather be doing sports than watching sports 0:49:00 Wade can see people out his window cycling, running, walking - that frustrates Wade because he can't understand the continuing education courses he should be taking for his license, but he can't understand it, it might as well be in a foreign language 0:50:00 So Wade lives with deep fatigue that leaves him horizontal most of the day - cognitive impairment that impacts thinking - and pain, but daily CBD oil helps with that, but he's still in pain every day - even though the most severe, lower back pain has been treated so that's not waking him in the night - but he still has joint pain, muscle pain, mysterious pain that feels like electrical shock or being poked with a needle 0:51:00 In November, during OT, Wade had a headache for 10 days straight - Wade's body also respsonds to temperature dysfunctionally - he can work up a sweat folding clothes 0:52:00 Wade's family knew he was tired, but they didn't understand the depth of his fatigue - Wade had a fitbit that tracked his activity, and the amount of sleep he required went up and up and up 0:53:00 The past month Wade has been averaging at least 12 hours a day of sleep - Wade lives alone so doesn't have caregivers, so he's forced to make meals and other activities to keep himself alive 0:54:00 Wade has to ration his house hold chores into small, short efforts - one solution Wade found is a robotic vacuum, so that has been helpful 0:55:00 In addition to CBD, Wade takes low dose naltrexone helps with pain mainly 0:56:00 Wade wasn't sure if the low dose naltrexone was helping until he missed a couple of doses, and his pain increased a lot - although he hasn't been depressed in 15 - 20 years, he's been given deloxitine (antidepressant) - Wade tried amytriptaline, but it gave him more brain fog, like a zombie 0:57:00 Wade is taking another medication (Prazosin) that helps with his postural orthostatic tachycardia - he asked his doctor for Mestinon, but the doctor wouldn't prescribe off-label 0:58:00 Prazosin can be used for nightmares, blood pressure and night sweats - for Wade, he needed it for the last 2 - Wade hasn't had night sweats since, so he's saving energy by not having to change his bed sheets daily 0:59:00 When you're 90% healthy, a 5% increase may not be too noticeable, but when you're only 10% healthy, a 5% increase is huge - what happens if the insurance company comes back and wants Wade to do 'exercise therapy' again? - Wade says he'll seek legal representation to have them charged with aggravated assault, a criminal offence 1:00:00 We've been talking for an hour - Wade's energy is dropping, his arms, legs, head feel heavy

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Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.